The story of an elf with Down's Syndrome and her family.

Month: January 2016

NIPT (non-invasive prenatal testing) is being hailed as an amazing breakthrough now available on the NHS in the UK, that will save so many babies. The theory is, women will be offered this testing and there will be no need for an amniocentesis – which carries a risk of miscarriage. No need for further testing because this non-invasive test will give you an accurate answer on whether the child you are carrying has Down’s Syndrome (or Edward’s Syndrome or Patau syndrome) and then you can be prepared for their future (aka you can abort). Ok, that’s harsh, but when you consider 9 out of 10 woman abort when finding out their child has DS through amniocentesis (generally quite far down the pregnancy time line), how many will choose to abort when having this accurate test at 12 weeks?

This has rocked the DS community because we are basically heading towards the elimination of Down’s Syndrome altogether. Which feels like a pretty crazy concept when you actually have a child with DS. We’re part of a community that will cease to exist, but not only that, it will cease to exist because society decided that babies with Down’s Syndrome have less value than ‘typical’ babies. That their lives are so tough(?) troubled(?) unhealthy(?), that they are better off not living. How do we explain this to Audrey?

I do of course have to acknowledge that 80% of babies with Patau syndrome will die before they turn one. I do understand that some of the conditions identified early will be extreme conditions that are not the same or similar to DS, so a breakthrough like this may save heartbreak further down the line. And I don’t want to wade into this debate without acknowledging that we are screening for abnormalities and health problems. It’s just that I spend my days immersed in a world where people with Down’s Syndrome are making a difference, they are enriching lives and fulfilling a role within society. They are not something that needs to be screened out of existence.

Let’s imagine you are given power and options when you are pregnant and you can fill out a questionnaire choosing various traits and facts about your fetus – shaping them and their future. What boxes would you tick?

Would you like this child to be born disabled?

Would you like this child to wake up at 5am a lot?

Would you like this child to be a fan of One Direction?

Would you like them to be slutty?

Would you like them to become a member of UKIP?

Let’s face it, we have little control over what that fetus will become. We can do our best to nurture a good human being. Someone fun, kind, clever… Someone who finds a perfect career and true love and happiness. Someone who looks after themselves and their family. But nothing is guaranteed. The only thing I can guarantee about having a baby, in my limited experience, is that you will love them unconditionally. They will be the best thing you ever did. The most beautiful thing you ever saw. The most valuable life to you.

It scares me that a screening test will tell you your fetus has Down’s Syndrome and that’s what will define the baby. You’ll imagine a disabled child. You won’t know anything else about them. The screening won’t say their face will light up at the sight of yours. That they will dance like crazy to even a hint of music. They will clap and cheer and cuddle their teddy and say “They did it!” when someone wins on a gameshow. They will stroke your face and say “lovely”. When they hear you say “kitchen” they’ll do the Makaton sign for “chicken”. They will constantly crack you up, surprise you and frustrate you. Your world will revolve around their happiness and wellbeing and you’ll love it.

The world needs diversity. Ups and downs. If we screen out conditions that cause complications and make people different, where will it end? How bland will life become if we can eventually make everyone “perfect”? It’s a sad future without more people like Audrey, that’s for sure. #dontscreenusout

Audrey has attended nursery since she was 10 months old. When she was born and the surprise of DS popped up, it never crossed my mind that she wouldn’t go to nursery whilst I was at work. Her needs were those of a baby, it didn’t seem like a stretch for a nursery to care for her.

Anyway, it’s funny how the thought of leaving her was so tough, then suddenly it becomes natural and if you can get them in nursery and have a day off to yourself – woo hoo!

I am very pleased by our choice of nursery, it’s a beautiful building with an amazing outside area (including a pirate ship!), they have rabbits, sensory rooms, yoga space… I remember thinking on the tour, ‘she will have so much fun here, more fun than with me’!

Audrey moved up to the over 2s room in October and settled in much easier than I had thought. After all, she can’t walk and she’s still quite small, but it didn’t phase her. Within a week of being there she stopped saying “yes” and started saying “ok”! Those pesky older kids and their slang!!

We were attached to Audrey’s key worker and were really worried about her adjusting to a new person. Thankfully, we didn’t need to worry. Audrey loves Grace, there is a picture of the two of them in her nursery book and when we get home and read about her day, she points at the picture and says and signs “Grace”. It’s actually a funny thing that I was worried about this other person that Audrey would form an attachment to, but now I feel so warm and fuzzy about it all.

At the end of last year they had parents’ evening and I let Ted go because I went last time. Plus he really hasn’t had a good chance to look around inside since the initial tour and I’ve been around several times.

Well of course she had a glowing report. She is falling within her age range for everything apart from physical development (fair enough, she can’t walk) and these are broad ranges of course, but she is ahead of her typical peers for literacy! Which is amazing. She loves books. She loves them so much she will often push a leaflet on me and make me read it to her. And all the books we read regularly, she reads along, she remembers key words and points and says/signs things on the page (like rabbit or hat). She sits alone turning pages of books chattering away, making up the story… sometimes she has her dolly, Alice, on her lap so she can read to her. It’s so lovely and is definitely something we have nurtured at home, but is supported very well at nursery.

There are a few things we hadn’t really pushed at home that nursery did the ground work on…

Counting: the first time we counted (I think it was Ted carrying her up the stairs), she joined in and we were blown away. She can count to 3 on her own, sometimes higher, but can count to ten if we are counting along.

Letters: rather surprisingly the other day she took my address book off the coffee table (it has A to Z pictured on the cover) and she said ABC!

Nursery rhymes: we had thought we’d avoid these, but of course once I’d started taking her to music groups, I realised you can’t really avoid children’s music, it does make kids happy. But the most exciting thing was singing a nursery rhyme for the first time and seeing Audrey’s reaction, realising she knows it! It first happened ages ago with “Twinkle Twinkle” – she lit up and started signing. Then I went to a group where they sung about a turtle “Bubble, bubble, bubble… Pop!” and I had no idea what this song was, but Audrey clearly did. Since then, she has just become so good at singing and signing, we can’t help but burst into spontaneous rounds of ‘Wind the bobbin up’, ‘Row row’ and ‘Sleeping rabbits’.

We’ve also had lovely moments at pick up, where other parents have told us that their child talks about Audrey a lot. It used to confuse me, Audrey isn’t always that interactive with other kids (she’s getting more so as she gets older), but I would wonder why these kids would be interested in a bum shuffler that’s usually not happy about another child being loud/in her face (she can be quite delicate!). But Audrey is a good sharer, she is gentle and she loves to say hello, blow kisses and offer cuddles, so I guess actually she’s a good playmate option. I’m always so proud to collect her as I know she’ll come out thrilled to see us “Mummy!”, “Daddy!” and will say “Byeee!” to everyone and blow them kisses.

Here’s a selection of some nursery pics they sent home and a Christmas decoration and picture she made (with assistance of course);

Actually, this week she brought home some bread she had helped make! I love nursery.

And so we bid farewell to another year… A year in which Audrey learned to bum-shuffle, speak and stand (with assistance). I finally found a new job, got pregnant and we moved into a house (goodbye cold flat!).

2016 promises much er, excitement? Is that how you describe the carnage of two children??

We celebrated NYE with friends, working to Thailand’s clock, so that we could say “Happy New Year!” with the kids and put them to bed at a reasonable time. So sensible, but perfect for parents who appreciate sleep. Ted cooked a delicious Thai curry, the kids had a boogie and it was very civilised. I’m afraid I was asleep by 10, but I don’t hanker after the old clubbing days… Let’s face it, NYE is often a let down anyway, but I’m just over it. Of course I like a drink and a dance, I’m just quite happy to be in this family zone at this point in my life (not too young, not too old – just!) and once the kids are older I will unleash my party animal side again I’m sure. I’m hopeful Audrey has my karaoke-fan genes (I’m pretty sure she does!!).

Anyway, Happy New Year to all – the drunk and disorderly, the early to bed Buck’s Fizzers, the clubbers, the snugglers… Cheers to 2016!